Starting out as the Health Equity Coordinator for the Dravet Syndrome Foundation (DSF), I knew I wanted DSF to be a place where everyone belongs and feels accepted, no matter where you come from or what language you speak. As a parent of a daughter with Dravet syndrome myself, some of the most cherished friendships I have are with other Dravet moms and dads. I’m lucky enough to have become friends with other parents from all over the world who just “get it”. I can always count on those parents when I need to vent, ask a question, or I just want to celebrate a win. Personally, I find one-on-one conversations more comfortable than participating in the larger group discussions in our very supportive Facebook group.
I have noticed though, no matter if you prefer a one-to-one sort of communication style or feel more supported by a large group, we all want to feel accepted and to know that someone has our back. Especially when times get tough or if we need help in certain situations. We want to feel confident that whenever we have a question or feel uncertain about a decision, someone will be there to guide us with lived wisdom and patience toward a thoughtful, well-informed plan.
I also know how hard it can be to ask for help when you really need it. If you’re like me, it’s possibly because you’re hard headed and refuse to ask, or maybe because you just can’t find the time to ask! You may be too busy with the day-to-day tasks when there are so many appointments to keep for your DS loved one. Or, you might think you will be misunderstood or judged for asking for help. Our needs evolve over time, and as the years go by caring for your loved one with DS, there’s an ongoing challenge in balancing the mental and physical demands of being both a parent and a caregiver. Not to mention the other members of the family who need attention, as well as the self-care we need to prioritize for our own mental and physical health. Other challenges might be more important like making sure you can keep your job to put food on the table, have health insurance for yourself and your family, and participation in social activities so everyone can feel connected to their community. It’s all so hard to maintain and it can be easy to get lost in the responsibility of the daunting Dravet syndrome diagnosis.
Questions naturally arise, such as: “Will I be able to clearly communicate what my loved one needs to their care team? Or “Can my family handle the outcomes of the decisions I have to make?” You might also find yourself wondering, “How can I advocate for Dravet when I don’t even know where to begin?” or “Do I have the time to take on another commitment?” – especially when considering getting involved in advocacy or fundraising.
These are all questions and scenarios our new Patient Equity and Inclusion Committee discusses in our quarterly meetings. We talk about what is missing in our community and how to include everyone. We talk about the newly diagnosed precious families trying to keep their heads above water, and the amazing families of adults with DS and what their needs may look like. We discuss our own needs, what can feel like failures, and celebrate big wins happening for us. We cheer each other on and we share sadnesses. I like to just call the group, “The Committee”, because while equity and inclusion are the focus, the people are what is most important – and all the members know it.
Since addressing health disparities can be overwhelming and requires a multi-dimensional approach instead of a “one size fits all” approach, I knew I needed input from the experts – our own caregiver families! So, when thinking about ways to create health equity within our patient community, I began reaching out to potential volunteers who had previously shared experiences of living in rural or underserved communities, or who had experienced unequal treatment related to their loved one’s Dravet care. Some members may also have been affected by economic challenges and have knowledge about health equity and outreach that could be helpful to our patient community.
Once the team got started and we began getting to know each other, the focus shifted to the mission and strategic plan DSF has in place. We want to ensure The Committee approaches those key elements needed to help our organization grow and for the needs of our families. DSF’s Patient Equity and Inclusion Committee is dedicated to advancing health equity and eliminating health disparities within the community, and within the programs DSF offers. Tackling big topics like limitations on access to care, parent and caregiver engagement, health-related social and economic needs, along with cultural appropriateness is our aim. By discussing and identifying potential barriers and making recommendations, our committee is serving as a dedicated platform to reinforce the “why” behind health equity. Through collaboration DSF wants to understand and help address barriers through an equity lens. The Committee prioritizes ensuring all DSF Family Network participants have equal access to our programs, services and educational and research information through focused engagement.
It is especially important now, at a time that research is advancing and advocacy is so important – that we represent all Dravet families by ensuring everyone has a voice. By prioritizing the well-being of all Dravet families, we are building a stronger and more resilient community and foundation.
This resilience will help to build a stronger community that can adapt to future challenges, and support patient families in not only surviving, but thriving, despite the adversity that comes with a Dravet diagnosis. Our hope is for all of our patient families to know they are not alone and that an entire community stands with them, united in hope and dedicated to raising funds and advocating toward the cure all our loved ones need and deserve.
The Committee will need your help, your trust and your voice! We want to know what you need and find ways to include you in all DSF priorities. We may send you surveys or reminders to advocate when we need strength in numbers. We will remind you that you are not alone and that we see you. We lift up your voice while we lift our own, so we invite you to share with us! Our committee members serve a two-year term ensuring we have an inclusive team, representing different caregiving backgrounds and patient age groups. Check out their biographies and reach out to us!
